‘I eventually learned that, instead of trying to pull people with dementia into your world, you have to enter theirs.’
Photograph: Courtesy of Christopher Eccleston

My father was a hard-working, passionate man. He was an alpha male, and captain of his sports teams: someone who stood up to be counted, and never hid away. Like everyone, he had flaws – but he loved me very deeply, and I loved him.

In 2000, he was diagnosed with vascular dementia – where blood supply to the brain becomes reduced. We are a stoical family, and that’s how we dealt with the news. As my mother would say, “You just have to get on with it.”

We realised the condition had been manifesting itself for the three years prior. For instance, he had been obsessed by the length of the grass in my garden. He would tell me every five minutes to cut it and I would snap at him. I look back at those moments with shame – you look to your parents to protect you so, when it seems they are falling apart, you lash out at them because you feel vulnerable.

My father left school at 14 and spent 25 years working as a forklift driver at the Colgate-Palmolive factory, where he met my mother, Elsie. At times, he worked day and night shifts to provide for us, and later he became a foreman. Although he only had a rudimentary education, it is from him that I acquired my passion for language and learning. He was an endless fount of poetry quotes and kept a dictionary that he had won in a competition by his chair. Often, he would pick it up and say, “Listen to this word.” To see a man like that almost without speech, and unable to even recognise his sons, was very hard. The disease completely dismantled his personality.

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The most traumatic experience is when people with dementia realise they are ill; I saw my father pass through that and fight it with all his will. Once he was at a party, at my brother’s house, and knocked over a cup of tea. My brother said it was fine, but my father’s embarrassment and anxiety escalated to the point where he was on his knees, repeating: “What’s happening to me, what’s happening to me? I am Ronnie Eccleston.” It was devastating.

During this period, he was diagnosed with cancer of the oesophagus and had to have a total gastrectomy – removal of the stomach. The NHS was incredible, but it was difficult. The surgeon, Mr Vickers, looked him clearly in the eye and said, “Mr Eccleston, it’s a very risky operation.” Despite my father’s confusion, he somehow recognised the doctor’s emotion and said, “Listen, you have got to do it for me, because otherwise it’s nowt down for pal [a Salford expression, meaning he would be dead] and, if it goes wrong, it’s not your fault.” When I saw my father showing such empathy, I don’t think I had ever been prouder of him.

I eventually learned that, instead of trying to pull people with dementia into your world, you have to enter theirs – but I made huge errors along the way. Once, I took my parents to Cornwall for a break and was doing the Guardian crossword with my dad. The clue was “dictator, six letters”, and straight away he answered “despot” – this was a man who, at this time, was struggling to go to the toilet alone. As I wrote it in he was staring, fiercely, at my face and asked, “Are you related to me?” I said, “Yes, I am your son.” He wouldn’t believe me and took me next door to my mother, saying, “He says he is my son, but I know nothing about it.” In his confusion he had no memory of his children, or that he and my mother had a relationship apart from her being his carer and his lifeline.

From that moment on, I stopped insisting I was his son and became his friend. When I saw him, I would say, “Hello pal, how you doing? How’s Elsie?” I became quite playful and would endlessly quote Shakespeare – I had done Hamlet, so would repeat the speeches and see the same flicker of passion in his eyes as when he had read me poetry. He’d say, “Bloody hell! How do you remember all that? Isn’t that a marvellous expression?” But he also needed you to be firm – he wanted to know someone was in charge, because it used to be him. So, if I drove him somewhere, he would say “I don’t know where we are going, cock,” and I’d have to say, “It’s OK, pal, I know where I am going.”

I salvaged a loving relationship and, for my brothers and me, it could even be quite humorous. But for my mother it was so much more complex. From the day he was diagnosed until the final year of his life, she cared for him in their house. After he passed away, she said to me, “The worst day of my life was not when your father died, but when I had to put him in a home.”

She is the most caring person on the planet, but it was an emotional, practical and physical grind, too. Carers are not recognised enough for the financial and practical support they provide. My mother did get some respite, but it’s difficult because he always wanted her and she would suffer when they were apart, wondering whether he was eating or if people were being kind to him. One day, she asked him, “Ronnie, do you know who I am?” and he said, “I don’t know, but I love you.”

My father died in 2012 after catching pneumonia while in hospital for a hip replacement, and I am still grieving. You can learn a huge amount from watching the bravery of people who have Alzheimer’s and dementia – but we are not paying enough attention. It’s a growing problem and we need families and carers to be educated, supported and understood. Research is important so that we can find out how factors such as diabetes, diet and stress can contribute, and so that we can educate ourselves about how to prevent this illness.

I am my father’s son, temperamentally and physically, so I have to be mindful of it. If it starts to happen, I will be scared and I hope I have someone like my mum around to care for me – and that, as a society, we are better at dealing with it. I feel so much sympathy for everyone who endures this disease or sees a loved one endure it. As my dad would say: “It’s just one of those things.”

Christopher Eccleston is supporting Alzheimer’s Research UK’s Fightbackcampaign. To find out more, visit alzheimersresearchuk.org, or see the charity’s new advert here